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December 11, 2012

A market research company has reached out to my foundation, The Staley Foundation, to help gain some insight regarding breast cancer treatment therapies. More specifically, they are interested in hearing from breast cancer survivors that are taking Generic Anastrozole.

The survey is for women age 39 or older that are currently taking generic Anastrozole (arimidex).

I recognize that dealing with cancer can be a difficult experience and that you may not want to participate in market research. Please feel free to disregard this request.

If you are willing to share your experience, you will, of course, be compensated for your time. The interview is conducted via an online survey and will last approximately 10-12 minutes. If you qualify and complete the survey, you will be mailed an honorarium of $50 within the next 30 days.

Please note this study is only open for a very short period of time and will close on December 16th. If you have any questions at all, please feel free to contact me directly. Thanks in advance for your time and consideration!

November 22, 2012

As a patient, I define participatory medicine as working in a collaborative way with my doctors, nurses, caregivers, and family members for the ultimate goal of improving my health. As a 20+ year cancer survivor, I'm fortunate that my healthcare has always been handled in a participatory way. I've learned very early in my cancer journey how important strong communication is with my healthcare team and my caregivers. I've learned everyone working to restore my health, including me, need to work from the same set of information. When doctors don't communicate with other docotors or even their patients in a timely manner, the patient suffers. When a patient and doctor work together to understand the patient's diagnosis and treatment options, and share information about the path they need to take to restore the patient's health, the outcome is always better.

Fortunately, more and more patients and providers are understanding the importance of Participatory Medicine. As a member of the Society for Participatory Medicine, I've had the chance to meet so many patients and providers that truly live the participatory medicine mindset. The Society is working very hard to create a framework and dialog for improving healthcare for everyone.

Participatory Medicine is a cooperative model of health care that
encourages and expects active involvement by all connected parties
(patients, caregivers, healthcare professionals, etc.) as integral to
the full continuum of care. The ‘participatory’ concept may also be
applied to fitness, nutrition, mental health, end-of-life care, and all
issues broadly related to an individual’s health.

I think this is an excellent definition that helps us all recognize the importance of creating stronger, more collaborative relationships with our healthcare providers and family members when working to acheive our best health.

I am a Participatory Patient

I've been a participatory patient from the first day I was diagnosed with Hodgkin's in 1991. It hasn't been an easy road, but I know I've been fortunate to work with providers and healthcare teams that worked with me to help restore my health.

Today, I had the opportunity to attend the Golden Spike kick-off event in Boston, MA to celebrate the first electronic health record exchange in the state of Massachusetts. The event was held in the Ether Dome at Mass General Hospital. I've visited MGH many times, but never made it to the Ether Dome.

To get to the Dome, you make your way through a series of small hallways in the depths of the hospital. Stepping into the room is like stepping back into time. Five rows, laid out in a tight horseshoe formation, look down upon the center of the room. Natural light shines through a massive grated window in the ceiling up above the last row, illuminating the floor and podium as the sun makes its way through the sky. A brilliant copper and glass dome sits above it all, shining additional light upon the room. It's a magical place for an event!

There's quite a bit of history in this old Ether Dome, a surgical amphitheater, first built in 1821. source: The Dome served as the primary surgical room for MGH from 1821 to 1867 and is famous for hosting the first surgery to use ether to anesthetize a patient in 1846.

John Halamka, the CIO of Beth Israel Deaconess Medical Center, presided over the event and opened by sharing the importance of today's date. Yes, on the same date in 1846, Dr. John Collins Warren performed the first surgery using ether in this very room. At MGH, it's known as Ether Day! Throughout today's event, light shined through the large windows and cast a glow on the speakers and attendees. You could almost close your eyes and imagine what it was like on that day in October 1846 when ether was first used to "knock out" the patient, all to eliminate the brutal pain that must surely accompany a surgery of any kind. Dr. Halamka even acknowledged the similarities between these two days: "We're here today to eliminate the pain felt by patients" that have the inability to electronically share medical record information. As a 20 year, 3x time cancer survivor, I can attest to Dr. Halamka's statement. I sat through the presentation thinking of the countless times I have hand carried my medical records, scans, X-rays, lab work, and other papers between hospitals right here in Boston. The frustration at the inability to effectively share information has been constant theme throughout the past 20 years for me as a cancer survivor. There’s unnecessary anxiety and stress that goes along with the responsibility for personally carrying your own medical records to a doctor’s appointment. During a snow storm in Boston, I had the misfortune of slipping on some ice on the way to an appointment. My body slid one way and my x-rays films went flying in another, landing in a snow bank. The rest of the morning was wasted away with worry; did the snow ruin my films? Will I have to retake all those x-rays?

Dr. Halamka noted that sometimes "you need a perfect storm for innovation." It's clear from the work carried out by the teams building the health information highway right here in Massachusetts that the storm of innovation has finally arrived.

Governor Deval Patrick spoke about the importance of quality healthcare as a public good. Everyone deserves access to quality healthcare and the Massachusetts Health Information is the first major step for this direction. One of the biggest issues in the healthcare has been the lack of coordinated care, reducing the effectiveness and overall quality of care. This lack of coordination has led to needless retesting, conflicting treatment plans, and a fractured healthcare network. These are fundamental issues that will be addressed by Massachusetts’s health information exchange. Information drives decisions that impact patient’s course of care. Without a full set of information at the point

Speaker after speaker reiterated these keys points. Interoperability, coordination, and quality care were the words of the day. From the patient perspective, these are incredible words to hear. This is what patients want. This is what patients need. Health information exchange is here in Massachusetts. It's all about the patients.

The highlight of the event was watching the live demonstration of the first electronic medical record exchange on the new Massachusetts Health Information Highway. Governor Patrick and his physician stepped to the computer at the podium, logged into MGH’s electronic health record system, and clicked “enter” to send his health record to the Bay State Medical Center. Instead of Alexander Graham Bell’s famous transmittal of “Watson, come here,” as the first sounds made its way over electronic wires, Governor Patrick said “There goes the data,” as his health record made its way across the health information exchange. A video conference showed the Bay State Medical Team receiving his information.

After Governor Patrick’s demonstration, Dr. Halamka also stepped forward and logged into the BIDMC system. He accessed his wife Kathy’s record. His wife was recently diagnosed with cancer and he recounted the frustration she felt when she realized it was up to her to transport her medical records from one hospital to another. You can read more about their experiences on his blog. He reviewed her record and added a small notation to the file: "One small step for Kathy, one giant leap for healthcare in the Commonwealth." With that, he scrolled through the list of verified recipients, selected Partners Health care, and with a click, sent her information on its way. He pointed out the security in place when setting up this information exchange and showed how the recipient is selected in a drop down menu within the application. Information cannot be exchanged without a trusted network in place and cannot be shared by simply typing in an email address and hitting send. This was a great demonstration and reassuring to know that a simply typo won’t send your electronic record off to some unknown recipient. The receiver is a verified entity within this network. The sender, who authorizes and confirms their identity upon login, is also verified. It’s an exchange of information over a trusted, secure network. While this was a small part of the overall presentation, to me this was the most important part. Showing exactly how my records can be transmitted over Massachusetts’s Health Information highway was very reassuring. I left the presentation with great confidence that my health records will not end up in a random inbox. The HIE is built to securely exchange information among trusted points along the network.

This is a great step forward for healthcare in Massachusetts. The recognition that coordinated care is the key component in the delivery of the best quality of care is enormous. Understanding the journey a patient takes on their way to achieving health is the only way to make informed decisions about a treatment or wellness plan. Congratulations to all involved in this project! Thank you for bringing us one step closer to receiving the best possible healthcare in Massachusetts.

October 07, 2012

The following post was originally posted on December 9, 2010. Almost 2 years ago. In honor of Breast Cancer Awareness Month, I've pulled this post from the archives to share with you. We still have a great deal of work to do - the Pink Ribbon has fractured the breast cancer community. It's time to work as a collaborative community, ditch the cause marketing campaigns, and refocus on our energies on the real meaning of the pink ribbon: Hope.

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As a breast cancer survivor, nothing's more infuriating than reading a story on how the Susan G. Komen Foundation actively pursues lawsuits against smaller foundations and individuals using the term "for the cure" in events or promotional materials. "Kites for the Cure". "Dancing for the Cure," "Dog Parade for the Cure." Komen's got them on their radar. Honestly, don't we ALL have better things to do... like find a CURE for cancer instead of chasing after small time charities?

You can read all about the lawsuits and actions of Susan G. Komen in the following articles:

The point that I take exception with in all these articles is how Komen defends these lawsuits. Komen's lawyers state that: "The charity views the lawsuits as responsible stewardship of our donor's funds.” Oh really? I haven't donated to Komen in a long time. However, if I was to donate again, I'd certainly hope that my funds were directed to more research, not lawsuits. That got me thinking about the total cost of the lawsuits that Komen's currently involved in. I dug a little deeper and pulled out Komen's annual report from 2009 [pdf]. I was hoping to find a line item in their annual report called "lawsuits" or "lawyer's fees". No such luck. However, I found some other interesting points.

Here's a quick review for 2009:

Komen took in $331,328,414 in donations and revenues.
Komen's General Administration costs, in 2009, were $37,148,000.
Their total fundraising costs across all programs were $29,496,000.

In the same year, the total amount given out, or allocated to:

Research was $70,147,000

Educational programs were $135,529,000

Screening was $39,653,000, and

Treatment assistance was $22,330,000.

Let's stop right here for a moment and reflect.

A organization that is actively pursuing other small charities over the use of the term "for the cure" does NOT spend the majority of their own funds towards RESEARCH FOR A CURE.

In 2009, according to Komen's Audited Financial Statements[links to PDF], the organization awarded $59,179,051 in research grants out of the total $70,147,000 that makes up the reseach figure. The remaining amount went to fees, travel, salaries, and other costs of business.

So, out of the $331,328,414 raised by public support and revenues, only $59,179,051 went to RESEARCH FOR A CURE. Only 17% of the donations received and revenue earned by Komen in 2009 went to "finding a cure." I find it very hard to believe that Komen's lawyers can justify their lawsuits by claiming they are acting as stewards for their donors' monies. For Komen to lay claim to the term "for the cure" or any variation of "the cure," shouldn't they need to show a greater effort towards funding the research required to find "THE CURE?"

135 million dollars for educational programs will certainly help educate men and women about breast cancer and treatment options, but will not help "cure" cancer.

39 million dollars for screening programs will certainly help men and women receive valuable services and help detect cancers much sooner, but will not help "cure" cancer.

22 million dollars for treatment assistance will certainly help many men and women receive badly needed treatment, medication, surgeries, and support, but will not help "cure" cancer.

Komen needs to reevaluate its mission and branding to be more in line with "curing cancer." It needs to establish its core functions to promote and facilitate efforts "for the cure" if they want to continue to chase down small charities that dare to use that phrase. For the cure, not for the lawsuits.

Health Activists: Are lawsuits like the ones Komen brings about good for the non-profit community? Are we doing enough as donors to make sure our monies are used in the best way? Is a cure for cancer just a dream? Are you surprised by this information? Let's talk!

p.s. Check out page 5 of the audited financial reports. Postage, Bank Fees, and Telephone accounted for $10,233,833 in expenses. I hope they at least bought the breast cancer stamps.

September 29, 2012

Imagine the hospital of the future. What do you see? Robots? Full body scanners the size of a pen? Maybe you think of Star Trek and the space age "Sick Bay" where crew members can be treated for different illnesses and conditions with the push of a button. Perhaps you envision devices that can communicate with each other or large flat screen monitors that show vast amounts of information in easy to read displays.

What about smart beds that can quickly determine how the patient is really feeling at that moment, both physically and emotionally? Or bed-side education kiosks that deliver critical information that patients can easily understand as they make their way through a training module?
Think this too far-fetched? I used to think such an integrated, electronic experience in a hospital or a healthcare clinic wasn’t possible. Now, I know that vision is much closer to reality than we might imagine. Over the weekend, I had the opportunity to tour the Cerner Experience Theatre at Cerner’s world headquarters in Kansas City, Missouri.

A background on Cerner

Cerner is health information technology company and the leader in the electronic health record market. Currently, it’s estimated that Cerner is licensed in approximately 9,300 facilities around the world, including more than 2,650 hospitals, 3,750 physician practices, and 500 ambulatory facilities. Cerner is also installed in such facilities as laboratories, ambulatory centers, cardiac centers, radiology clinics, and surgery centers. 800 home health facilities, 40 employer sites, and 1,600 retail pharmacies have also installed Cerner solutions. Over 40,000 physicians use at least one Cerner product in their daily work. Cerner’s Annual Report has additional stats on the overall electronic health record market.
Cerner’s mission is to improve the system-wide health care delivery model and enhance the overall health of communities. Cerner has published a great deal on Meaningful Use and Health Care Reform. The Cerner Experience Theatre puts all this into practice.

The Cerner Experience Theatre

I attended the Partnership with Patients Summit and Cerner was the main sponsor for the event. All summit participants had the option to visit Cerner’s Experience Theatre, and I’m thrilled I had the chance to go. The Tour follows a fictional patient named “Walter” through a shortness of breath episode. Walter is a 70 year old gentleman with a history of cardiac issues and diabetes. On this particular day, Walter is out for a walk with his friends and begins to feel run down and short of breath. Walter wears a medical device, similar to watch, that tracks his current heart rate, blood oxygen levels, blood pressure, and other vital signs. His tracking watch continuously beams this information to a telehealth command center. Our tour starts in this simulated telehealth command post. Walter’s telehealth nurse is alerted to changes in Walter’s breathing rate and heart rate. His oxygen levels are low and his heart rate is high. Given Walter’s medical history, the telehealth nurse quickly alerts Walter, via text and messaging to his iPad that he needs to call in as soon as possible. The telehealth nurse is able to schedule a time for a home health visit. Walter gets the message and participates in a home health visit. The decision is made to get Walter to the hospital immediately – bypassing the emergency room.
The home health care providers can collect and send all the relevant information from the visit directly to your electronic health record. This new information is sent directly to Walter’s doctors to alert them to changes in his current condition.
Imagine knowing that your data is being used in a proactive way, not a reactive way. Decisions can be made based on the most current data, available instantly. To me, it was amazing to think that this level of integration can exist. A nurse watching over your data stream, analyzing information as it comes in, and making real-time clinical decisions based on this information? Add smart devices that can alert you to impending critical health situations and you have an incredible healthcare safety net following you wherever you go.
As the tour progress, a quick review of the hospital’s current patient load shows there’s room for Walter to be admitted right away. The cost savings of bypassing the emergency room in cases similar to Walter’s is estimated to be $10,000.
Walter is admitted, assessed by his medical team, and given medications and started on fluids. The tour ends in Walter’s simulated hospital room. Two very interesting solutions were highlighted at this part of the tour: A smart dispensing cabinet for medications and a smart hospital bed. The smart medicine dispensary is an electronically controlled unit that prevents unauthorized medicines from being unlocked and administered. This helps eliminate potentially fatal drug errors.
The best part of the tour was learning about the smart hospital bed. As a 20 year cancer survivor, I’ve spent a fair amount of time in the hospital and I can certainly say that a “smart hospital bed” would be a great improvement. The smart bed tracks vital signs, patient’s weight, and other stats. You can learn more about the smart bed that was designed in partnership with Hill-Rom in this review from the Kansas City Business Journal.

In the end, Walter recovers from his shortness of breath episode and is released from the hospital. The tour highlighted the potential for an improved patient experience based on coordinated data access, integrated clinical information, and seamless transitions from one mode of care to another. This was truly healthcare of the future.

For this vision to become a reality, more physicians and healthcare providers need to begin the journey toward meaningful use. Cerner is doing an incredible job at working toward building the premier healthcare experience of the future, today.
The importance of health information exchanges, electronic health records, and coordinated care were all on display in this tour. To make seamless transitions from one clinic to another, they need to be connected. It’s as simple as that. If hospitals are not on the same electronic health record system, connecting via a health information exchange or other messaging service becomes that much more important. To me, this was the biggest takeaway from this tour. Electronic Health Records are really making a difference. To take healthcare to the next level, the connectivity needs to be addressed.

Thank you Cerner for the opportunity to visit your offices and see this incredible facility!

September 08, 2012

Please accept this blog post as my application for a travel scholarship to attend the upcoming Partnership with Patients Summit in Kansas City, MO on September 21st.

I would be honored to attend this powerhouse event in Kansas City. To me, this is the event of the year that I need to attend. With the incredible speakers on tap to present, I simply cannot miss this event. The opportunity to learn from the leaders of the epatient movement, including Regina Holliday, Dave deBronkhart, Casey Quinlan, and Trisha Torrey all at the same time is a dream come true! I have followed so many of these key pople for so long on twitter or Facebook.

While I've had the chance to meet some of the folks that will be attending, the chance to finally meet so many of them at once and have the chance to network with other members of the Society for Participatory Medicine is truly a once in a life time chance. I know I'll come away from this event, with a renewed passion and drive that will allow me to take my work to the next level for these wonderful organizations.

As a three time, 20+ year cancer survivor, I'm truly a "professional patient." As a member of the Patient Family Advisory Council at Tufts Medical Center, I'm working hard to make sure the patient voice is heard, recognized, and respected as a key person in a healthcare team.

With my work in social media to develop virtual support communities like #BCSM (Breast Cancer Social Media) with a fellow breast cancer surivor, Jody Schoger, and Dr. Deanna Attai, I can certinaly share everything I've learned on how to build vibrant communities working to solve critical healthcare issues from the patient perspective.

As Community Manager at the HIT Community, I'll also use my enginering background to help make sense of the work currently under way in the health information technology industry. My goal is to make sure that patients understand how health infomation technology can ultimately improve their health outcome. Understanding the importance of electronic health reacords is very important to me. Networking with individuals while in Kansas will help me expand on a successful series I've started collecting EHR Journeys Stories from physicians and healthcare providers. Meeting more people that are willing to share their stories is main reason why I'd be honored to attend.

Everything I learn at the Partnerships with Patients event will be put to immedidate use, throughing blogging about the experience, to telling my fellow PFAC council members about the journey. While some might think this is "just a travel scholoarship," I say it's a grant to attend, meet, hug, and connect with some of the most influential patient advocates working very hard to improve healthcare for patients around the world. I'd be honored to be included in this once-in-a-lifetime summit.

Thank you for the opportunity to submit an entry for your spconsideration.

August 15, 2012

As a cancer survivor, I'm surprised at the number of times people ask, "Are we winning the war on Cancer?"

Advances made in cancer research and treatments are making a difference, but I still think there's a long way to go. It's not a yes or no question and unfortunately most people immediately assume failure when the answer isn't a definitive "YES." I know we're making great strides in the war on cancer - I'm living proof.

In a recent report by US News & World Report, it seems the "war on cancer" gets mixed reviews. Dr. Samuel Broder wrote an excellent article outlining the progress and pitfalls in: "Health Advice: Why is our Progress against Cancer so slow?" The mortality rates across the board have decreased since the mid-90's, with one exception: rates from women's lung cancers have remained stable. Based on numbers alone, one could surmise we are "winning the war," however progress is still viewed with a sense of pessimism and defeatism.

I learned a very important lesson from this piece:

Perhaps we should reframe the way we view the "war on cancer."

Like Dr. Broder suggests, the discourse is inflammatory and simplistic; it leads us to believe it's a win or lose situation. It's much more complicated than that. Progress is incremental at best, and we are, indeed, making progress. However, the cycle of research, clinical trials, and implementation is much longer in actuality. It take years to find drugs that help address one small part of the cancer crisis. The "war on cancer" is essentially a series of baby steps. Research, trial, treat.... rinse and repeat. Victory is still not in our sights, but we're getting closer.

Years ago, I stopped referring to the search for more cancer treatments as the "War on Cancer." I know from experience there's still much to do. As a cancer activist, I'm hoping the research community uncovers more treatments in the years ahead. Until then, it's up to us to do as much as we can to encourage and support those dealing with the everyday realities of a cancer diagnosis.

The article suggests a few ways we can all help make advances in the cancer community:- Help expand research initiatives- Encourage more private businesses to engage in this community- Encourage cross-discpline research- individualize and maximize treatments options- Apply today's knowledge and experiences NOW

and finally:- Build a better community: focus on community service and outreach

As cancer activists, we can all work to build a better community and expand our reach to all populations dealing with cancer. Let's work on this together!

Do you find that members of your community refer to the "War on Cancer"?How do you feel about advances in cancer research and treatments? Are we making a difference?What's the best way to reframe this conversation?How can you reach out to more people in the cancer community to help reinforce the progress?

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar! See you there!

January 28, 2011

Have you seen the Real Age calculators? Basically, it seems that we can calculate our real age by factoring in things like smoking, diet, exercise and medical history. The goal is to keep your real age as low as possible. Apparently, staying "young" is the key to good health and longevity.

Well, I've been thinking about this real age test, and feel it really does Awesome Cancer Survivors a serious injustice. We get better as we age, not as we force our "real age" to a more youthful number. As cancer survivors, each passing year adds to our collective strength and overall health. In sharp contrast to the Real Age, a higher Cancer Age is a true status symbol! To address the Real Age test's shortfalls, I'm rolling out a new test. It's called the Cancer Age AssessmentTM.

This assessment will reward cancer survivors with their true Cancer Age! Your Cancer Age reflects the pain, anguish, and sheer guts it took for you to battle cancer and continue on as an Awesome Cancer Survivor. As awesome cancer survivors, we've all experienced more in our lives than most people. Your Cancer Age lets everyone know that you are a super hero!

Take the Assessment!

Write down your Current Age: ________________________

If you've never had cancer, subtract your current age from your current age. You're at 0. Please stop here. Your cancer age is 0. There are no prizes for you.

If you've redecorated the oncology waiting room because it was looking a little drab, add 50.

Results:

Add up your score and arrive at your Cancer AgeTM.

1-50 - Congratulations, you're an Awesome Cancer Survivor! Welcome to the club. You're on a path to becoming a truly empowered survivor.

51 - 1000 - WOW! Not only are you an Awesome Cancer Survivor, you're a true old soul. You're a sherpa, guide, expert, and treasured resource for other cancer survivors. You've battled cancer with grace, wit, charm, and alot of grit and perserverance. You have an ability to reflect on the past and see great possibilities for the future. You live each moment to the fullest and you're making sure that everyone around you lives the same way. You see beauty in all things and truly live a life with a happiness that aches. Without you, the cancer survivorship landscape would be a lonely place. Thank you for all you do! I'd climb a mountain with you!

1000 + - Your score is off the charts! Please contact me immediately, I think there's a clinical trial out there somewhere specifically for you. Seriously. Call me right now!